Introducing myself to your Community.

[Splodge60]

As a newbie to this community, I am not new to to HU, as I have a large number of co-morbidity diagnoses, some of which have included the word ‘atrophy - ie. brain atrophy and muscle atrophy. I am exploring this trust forum to gain some more insight and understanding of your area of expertise and whether her any of your forum members, can learn anything from myself. Firstly, I am a 71 year old female, retired, research psychologist. I have had various health issues all my life. My current situation is a reliance on mobility aids because of excessive pain due to osteoarthritis. I use a wheelchair, pushed by husband for short but difficult movement, a mobility scooter for venturing further afield, usually around large superstores, and a stick, or zimmer, plus stairlift at home. I have recently had to move on to stronger painkillers, but keep to minimum where possible. My health problems are now a way of life that I just have to live with. I keep myself busy by writing, using computer and spending more time than I like, falling asleep, for which I have no control. I’m happily married (third time lucky) with 2 adult kids and 6 grandchildren.. life is limited, Zquality of life is poor and I e been placed on the Palliative Care system with regular input from their nurses. I have strong religious faith, which is where my strength comes from. I talk very little to family and friends about my health. They are mostly bored of hearing about it, plus they would rather we talked about their issues and problems, which, for some strange reason, they think are worse than mine. Ah well, life goes on! For now I would appreciate your input as to the areas of health covered by your group and a little bit about yourselves, to help me learn!,,,, Thank you.

[Yanno]

Hello Splodge. This site is for those who have an interest in the condition Multiple System Atrophy - usually because they or a loved one has or has had MSA. If you wish to find out more about MSA, I suggest the first stop should be the Multiple System Atrophy Trust web site which you can find here msatrust.org.uk

Good luck in your search for further information.

Take care, Ian

[Splodge60 in reply to Yanno]

Thank you xxx

[ChocolatePot]

Hello Splodge. What you find out very quickly every journey is different. My dad had MSA and now my hubby has it. Both totally different journeys, symptoms and deteriorations.But hubby has also got severe osteoarthritis of both knees and in a world free from MSA he would have had replacements by now. He stubbornly refuses painkillers, but had to admit to some as the pain wakes him up at night. He is also reduced to zimmerframe and wheelchair and stairlift. But as he keeps telling me, I am still in there! So keep fighting. Take care

[Splodge60 in reply to ChocolatePot]

Thank you xx

[Derkie54]

Hello Splodge,

Welcome to the forum, I hope you find the information you're after.

I think it's fairly common not to get a quick diagnosis of MSA.

In my wife's case it has gone on for many years starting with possible MS, then moving on to PD and now with the experience of our neurologist there is a MSA-P diagnosis.

It certainly helps if you know what you're dealing with but MSA is an unusual one.

People have different journeys and symptoms and there's not a lot of medication available to treat the MSA.

L tried some of the PD medications but it made no difference. This is normal, some people benefit and some people don't

I've learnt a lot from the forum, they're a friendly bunch and always ready to share, but remember these are our own opinions and personal experiences.

For more qualified help the MSA trust is the place to go.

Keep smiling and as you say.......life goes on

Derek